NSPKU Survey - Your experience of PKU

What is this survey for?

We would like you to complete a survey about living with PKU. Responses will be used in support of NHS procedures in England, Scotland, Wales and Northern Ireland considering whether the drug Kuvan (BH4) should be provided to patients. The responses may also be used in support of NHS procedures considering future treatments for PKU. The NSPKU may provide data from the survey for publication in academic journals. The NSPKU may also publish data from the survey in support of its work campaigning for investments and improvements in services for people with PKU.

All the information you give will remain confidential and anonymous. Therefore information that identifies you or your family will not be made public. If you answer the optional "free text" questions your written answers may be used in published materials but your name will not be used. The NSPKU will not know the identity or email addresses of people who complete the questionnaire.

Who should fill out the survey?

Please fill out only one survey per patient with PKU. If the patient is under 18, the survey should be completed by a parent or guardian. If you have more than one child with PKU, complete a survey for each child with PKU. If you are the parent or guardian of an adult over the age of 18 who lacks mental capacity, you should complete the form on their behalf.

I need help completing the survey - what should I do?

If you find it difficult to complete the survey online - for example because you have health problems, or you do not have access to a computer, please telephone the NSPKU on 030 3040 1090, or email info@nspku.org so that you can give you answers over the telephone. It is OK to have a friend or relative help you read and fill out the questionnaire as long as the survey records your answers.

Please click on the link below to start the survey...

https://docs.google.com/forms/d/e/1FAIpQLSeJGk4huOIP1O1nEJf8aWs_08tNxO8Tj-u5fzIJAF5gfgMeWg/viewform

Thank you.